Florida Trip 2009

Posted on 13. May, 2009 by Jillian in Glycogen Storage Disease

Okay, we got back from the Glycogen Storage Disease Program at the University of Florida LATE Saturday night. As always, it was interesting getting there, inspiring talking to Dr. Weinstein, and we left with a list of new things to do and with a much easier way of taking care of our four GSD 1a boys. This will definitely take several posts.

The Friday before we left we found out that Ben might not be able to go with us- and we wouldn’t know until the day before our plane left. He needed to finish up work on a fairly large client, and you know it was important if I didn’t begrudge him deserting us on the hardest week of our year. I typically have grudging tendencies. Of course, we had non-transferable, non-refundable airplane tickets. Since it was only a possiblity that he might not go, we decided to play it low-key and just ask around at our unsuspecting family members to see who we could trick- I mean ask- to go with the boys and me. We had a few options, but everyone, especially myself, believed it would work out so Ben could go with us.

It had to.

It didn’t.

5:00pm Monday evening we were freaking out because not only had an airplane ticket that we bought for $250 a few weeks earlier jumped to $1400+, but the flight was booked, and there were other people in the waiting line so if my husband cancelled his ticket, someone else would be the next to get the ticket. Not cool. It would be too dangerous for me (on a few levels) to take all four boys by myself over 2000 miles. So, after spending 30 minutes on the phone with someone from United Airlines who couldn’t understand what I was saying, and had been trained only to say “I’m sorry, there is nothing I can to do help”. I was a little less than calm. Ben took a break from work after he heard me screaming like a banshee at our kids while talking on the phone and trying to finish up some last minute packing. Looooonger story shorter, after a few hours on the phone he at least got my Dad (the sacrificial lamb) on the same flight as the rest of us going to Florida and we’d have to deal with the return trip later.

My saintly father then drove to my house that night and we left at 6:15 the next morning. There was some miscommunication about alarm clocks, etc. so we didn’t wake up until 6:00. All things considered, I’m pretty proud of us getting out the door that fast. I think it may be a record; and I attribute it to my now amazing planning/ packing skills- if only I could remember to work out correct wake up times…  

To be continued…